Tuesday, July 31, 2012

Awesome friends

My friends taught me a valuable lesson last night: Don't settle.

Four of us went to dinner last night at Ray's Hell Burger.  We got a seat at two tables for two pressed together, but the tables were too low for me to get under.

OK, I thought, and I just positioned myself as best I could.

But they kept looking and one went and asked the manager for something to raise the table.

The manager brought out two of those big plastic cup racks. That my friends and the manager put under the table legs, but my chair hit them so I still could not get under.

Again, I was like OK, and I asked the manager if I could just use one of the racks as a tray for my lap. As she went off to clean it, I looked at one of my friends who appeared to be doing a little geometry in his head.

He was looking at the table legs and suggested we move them out of my way more.

When the manager brought the rack back with several paper towels covering it, my friends had rearranged the tables to look like this: <><>, joining at the point instead of the side.

I was able to sneak in closer in the middle, and once I had the tray, I was ready for a grade dinner. It was.

It would have been awesome even if the tables did not get rearranged, and I didn't get a tray. But those things reminded me why my friends are the best!

PS: This is my second post today. Don't get used to it.

The best movie I ever heard; thanks Regal Ballston and Sony

I just watched the best movie I have been to in more than 10 years this afternoon At Regal Ballston Cinemas.

Don't get me wrong. The Amazing Spider-Man was not the best superhero movie I have seen this summer (The Avengers). It isn't even my favorite Spider-Man movie (Tobey Magurie's first two rank as two of my favorite superhero movies. The third, in case you are wondering, was better than Elektra but worse than Daredevil.)

It was a fun movie, but any Spider-Man movie without MJ is missing something awesome.

What made it great was the personal closed captioning system many Regal theaters now offer on almost any movie. That's right: captioned movies!

You wear these glasses that project captioning on the screen for you in transparent green. The captioning isn't all at the bottom but because it is transparent, it doesn't block anything. Sony seems to have made them.

I can usually follow action movies even if I miss some dialogue.

But I cannot overestimate enough how amazing it is to know everything that is said. Beautiful.

Saturday, July 28, 2012

My feet should be registered as lethal weapons

I kicked Claren yesterday. Not hard and not on purpose.

She was in a hurry to get outside and as I opened the door she nudged my foot. My foot responded by showing its astounding reflexes and smacked her in the snout.

Her reaction reminded me of my nephew's when I kicked him in the face.

Not when I kneed my nephew in the face. I still contend that was his fault, too. That resulted in tears and a trip to the dentist.

No, I am talking about when I was getting off my trike. My sister was helping me unlock my feet from the pedal clips, and my nephew, who was quite little, got too close.

I kind of kicked him in the face when my foot came free.

He didn't cry. My sister said he just looked like "What the hell just happened? Did you really kick me in the face?"

That was how Claren looked. At least until she ran outside.

Tuesday, July 24, 2012

So close

I was all set to work from home tomorrow I got everything connected BUT ...

I can't login now that I am not on the network and I never thought to ask how.

I could stay home an call them tomorrow except of course I can't really hear on the phone.

Mom offered to call but I turned her down.

I'll just go in tomorrow, find out how to log in and try to telecommute Thursday.

PS: My 1,000th post. Nowhere as cool as Patrick, but ...

Sunday, July 22, 2012

No longer a newsman

I had a good swim today -- 14 lengths. My goal is to do one more length each time. Well, that and the breast stroke.

But mostly I was thinking it was one year ago that I left USA TODAY.

I can't believe it has been just a year. I  still miss the folks I met there something fierce.

And the job, too. I miss too much now because it is not my job to know it.

I love my new job, though.

Friday, July 20, 2012

Sucky parts

I emailed this co-worker to ask for some help with a Intranet page.

She quickly replied that she wasn't at work but was with her sister who was dying. I apologized and told her nevermind. She then emailed back to say it was OK, that it sucked but was part of life.

I did not reply to that but I started thinking about a counseling session I had years ago.

The counselor had given me what she liked to call homework, a sheet of questions.

One of the questions asked something like: Do you think life is hard? Of course I answered yes.

The counselor wondered if I thought life was hard for me or for everyone.

Being younger and having a bit of a martyr complex, I said me.

I know that life is hard for everyone, like my co-worker.

It sure seems, though, that I have more sucky part than a lot of other people.

Tuesday, July 17, 2012

It's FA's fault

A while back, my little sister and I were playfully arguing about whose fault it was that we did not get along in high school.

She blamed me and said I was essentially a mean nerd. I was definitely a nerd.

I blamed her for being a typical annoying high schooler and added that I was coming to grips with a deadly disability.

This is not the first time I have used this excuse. I told one of my nieces that even though her SAT score was higher than mine I was coming to grips with my disability. (Plus, she got to use a calculator and write essays. Just give me a 1600.)

Nobody buys this reasoning. My sister tells me to shut up and says I did not even know about Friedreich's ataxia. My niece says she took the test when her dad had cancer and she thought he was dying.

These are all valid considerations, but I think mine is, too.

An insecure, withdrawn teen trying to figure out why his body just doesn't work right.

Of course, I didn't think it was anything truly bad ... at least consciously. I had people I trusted tell me I was out of shape. My family thought I'd grow out of it. I was less clumsy than my brother. I never considered asking my doctor.

My sister was just one more thing in my life that I could not control. Maybe that is why I yelled at her for putting down the top on the convertible instead of waiting for me to do it.

Yes, it was mean and awful.

Yes, I was a jerk. The FA made me do it.

Sunday, July 15, 2012

Slip-sliding away

Last week I went to Target for what is an all-too-regular trip to get my glasses straightened. 

While I was there, I also bought some shorts.

Shorts and pants that feel comfortable when I am sitting tend to slide down when I stand up. So I prefer shorts with elastic bands.

One of the pairs I bought was a pair of athletic shorts. They are made of quite slick material, so I slid a bit on my wheelchair seat. But nothing too bad ... until I went to bed.

It is a quick trip from bathroom to bed so I didn't have my seatbelt on. I bent over to pick up some Claritin that had fallen, and I slid right off the chair.

My head flew into my bed and knocked the mattress a foot off the mattress pad. My face then smacked into the mattress pad, then the floor.

I picked my face far enough off the floor to see if there was a pool of blood. There wasn't. I felt my face and only felt a little liquid, so the next step was getting up.

It was after 11, so I did not want to call Mom and Dad. My sister and family are on vacation.

Fortunately, my shorts allowed me to slide easily, which I did. I got to the pole near my bed, wheeled my chair close to me, then stood up using the pole and got in my chair.

I then went and  checked my face in a mirror. My nose was cut and still hurts a bit.

Luckily, though, I did not mess up my glasses.

Saturday, July 14, 2012

Life is not so Good

I like Life is Good clothing. Very happy-looking and it seemed like a good company.

The problem is that most, if not all, the stuff their cartoon character does on the designs is stuff I can't imagine doing. Stuff like, you know, walking.

So I emailed them, asked if they had ever considered putting their character in a wheelchair. I didn't expect them to agree, but I did think they'd email me back. I even got an automated email Tuesday saying they'd respond within 48 hours.

Maybe the response got lost or it's in the mail. But I am starting to like them less.

Wednesday, July 11, 2012

Fine, it was lazy

I think I was a very bad disabled person today.

I got home, I was tired, and it was warm.

Rather than spend 15 minutes wrestling my shoes and pants off, then putting on shorts and shoes, I asked my sister for help. So I could nap sooner.

She did, of course, although she laughingly said I was being lazy and exaggerating how long it would take me to change.

For the record, it took 15 minutes even with my sister helping before I sat down and snoozed.

Monday, July 9, 2012


I hurt myself today.

It hurt really bad.

I focused on the pain, and for a moment there I was pretty sure I was going to throw up.

The door of the wheelchair stall sits half open. I like this. Normally, the doors to wheelchair stalls close  when they aren't in use. This means you have to try the door to see if anyone is in it. Or look under the doors.

Today, though, the half-open door was bad. I ducked through the door but only my right leg got past. My left leg stayed on the other side of the door.

My reaction time, I think I have mentioned, is not good, so I kept driving my chair into the door. The door responded by opening wider, or trying to. It was unable to open because of my left leg, which slammed into one of the metal parts of the chair.

I scrambled then to jerk my chair backward. I somehow managed to ram it farther into the door, which rammed my leg into the chair farther.

It was at this point that I tried to relax, focus on the pain and take my time backing off the door. As I said I almost barfed.

Then the joystick knob came off.

Then I backed the chair up.

Then I went in the stall and tried not to cry.

Friday, July 6, 2012

Olympic sadness

Last week, before we lost power, I was watching the Olympic swimming trials.

Besides convincing me that I should  learn the breaststroke (oh, how my swimming teacher will laugh), the trials reminded me of an email conversation I had with a former beach volleyball pro.

Really, I know a former beach volleyball player. Of course, I knew her when she was well into her second career of career counselor.

It was probably in 2004. I was telling her that as much as I liked the Olympics it was so hard to watch them because I couldn't imagine doing what these athletes do.

She agreed, but pointed out ed that 99% of the population can't do what athletes can do. And she mentioned a story at the time about an Olympic hopeful who just missed the Games and killed himself.

I watched this year, noticing the fractions of seconds that separated success from also-rans, and I understood a little more what she was referring to.

I guess I can imagine what swimmers do (at least backstrokers) and dressage riders, and how hard it is.

But track and field? How do you stand, let alone run or jump or throw something? Even beach volleyball is mind-boggling to someone with no dexterity.

I'm sure I'll watch the Olympics this year. I am also sure it will make me sad.

Wednesday, July 4, 2012

Powered up

Finally, got power back last night.

We had a generator to power the important stuff like the 60-inch TV, but I am pretty helpless without power.

I spent one night at Mom and Dad's recharging my chair, so I never ran out of power. But I could not do much but watch TV. I couldn't really get out of my chair. We had Internet, but typing while in my chair is tough.

How whiny do I sound?

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